Friday, December 30, 2016

Can Determination Be the Key to Success?


Many bloggers participate in a meme to choose a word for the year, that they will use as a springboard to achieving goals in the coming year.

As my regular blog readers know, I am the sister in law of a man in his late 50's, living in New York State, who has a developmental disability called autism. I call him "Bil". My husband is his brother's guardian.  Together, we are determined.  Although Bil lives with his elderly mother, he will be my husband's responsibility one day.

It's not an easy thing.  Therefore:

DETERMINATION will be my word for 2017.

will give us the strength to find services for Bil that will permit him to gain some independence; to be able to do more of the kinds of things he wants to do.  This is not an easy thing to do-dealing with government bureaucracy never is.  In 2016 my husband had to deal with delays, ranging from the agency moving to paperwork being lost to...well, you get the idea.

But it looks like the intake for this service may actually happen later in January.

DETERMINATION will help both of us persevere.  I refuse to be be swallowed up by the need to help with the needs of my elderly mother in law and "Bil".  Is it selfish?  I do not think so.

to eventually write a book to help others with an adult member of their family who has autism had disappeared.  I had hoped to use this blog as a vehicle for that.

What I am finding is that I am still floundering; that this blog is still adrift without a clear course of action.  I am determined for that to stop, even if I have to stop posting for a while and regroup.

Finally, I am determined that Bil, once the time comes that his mother in law can no longer care for him, that he will have a place to go.  Shouldn't that be our home?  Well, that would be worth a post or two just on that topic.  We are both older than Bil.  Living with us can not be a permanent solution.

And, there is the matter of the incoming President of the United States. There is nothing I've seen that convinces me that Bil's quality of life will be improved by the change in administration.

I can only hope I am wrong.

Come link with me and others revealing their word for 2017.  Join us at Alphabet Salad and  #FridayReflections.

Friday, December 23, 2016

A Legacy of Love

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou.

Sometimes, people make the mistake of thinking that people with autism can not feel.  That is so far from the truth, although they find it difficult to express those emotions in a way that we, the community of those who don't have autism, can easily understand.

When you grow up different, many of your interactions with others are negative.  You may grow up believing that you are not worthy of love.  For those people, the special people who make them feel good have special places in their hearts.

Since moving to the area where we live in upstate New York last year, my brother in law, "Bil", has undergone many changes in his life.  It has been hard for him, but "Bil", who has autism, doesn't show much of it externally.

For the past year, "Bil" has been able to participate in a day program two or three times a week.  They transport him to and from, and he can play word games, exercise, color (adult coloring), and enjoy lunch.

Recently, the program had a holiday open house.  "Bil" came with my husband, me, and my mother in law, "Bil"'s mother.

We were greeted by one of the directors.  "Bil!", she exclaimed, "it is so good to see you.  Thank you for coming!"  She turned to us, smiling.

"Bil is one of our favorites here; we are so happy to see him.  We are happy he comes to our program.  We enjoy him being here."

I looked at "Bil" His face could have lit up the room. It may be a cliche, but now I know where the expression comes from.  I have known him for over 40 years, but I have never seen that kind of smile on his face.

Maybe that director says that to all the people who come.  Many are elderly, all have some kind of medical or developmental issue.  But it didn't matter.  "Bil" knows he is valued, that he has a place where they can't wait to see him come off the bus and walk in the door.

"Bil" will never forget how that director makes him feel.  And neither will we.  From his school days, and beyond, my mother in law received so much negative feedback, as do the parents of many with autism.

I wonder how many times she's been told "we like your son, we want him to be here."

None of us will forget that evening, and the power of a few words.  That director truly is leaving a legacy of love with those she works with. 

Linking with #FridayReflections. 

Friday, December 16, 2016

If Only #FridayReflections

I am again joining #FridayReflections over at Everyday Gyaan.

The prompt today is "If you could re-take a class from your school or uni days, which would it be?"  I want to look at this prompt from another angle.

I wish that there had been a different educational world for my brother in law with autism.

I remember well, my first experience with special education, and how far we have come in the last 50 years.

I started elementary school in the Bronx, a borough of New York City, in the United States, in September of 1957.  One day, and it may have been in second grade, we had to move down to the "special ed" room for several hours.  It was a scary place.

It was located in the basement of the elementary school.  The "special ed" students (our name for them used a word totally inappropriate today - a word that began with the letter "R"), were isolated from the rest of the student body.  I never did see them again.  I barely knew they existed.

Those children, isolated in my school's basement, had few rights in education, as did "Bil", my brother in law, who was born in 1958.  Not until 1975 was the "Education of Handicapped Children Act" passed.  By 1990, this law had assumed its current name, IDEA, the Individuals with Disabilities Educational Act. 

But these laws were too late for my brother in law.  I can wish that I could go back in time and bring what exists now to those times.

There was no modern Child Find when Bil started school in the early 1960's.  Earlier, when he was a toddler, there was no alarm over the fact that Bil was not speaking by the age of two.  Rather, my mother in law was blamed for his deficits.  She "spoiled" him, her doctor claimed, when he pointed to items and grunted.  He threw tantrums when he wasn't understood. He didn't speak until he was five.

In today's world, his autism would have been recognized at an early age, hopefully.  He would have been entitled to educational services through the age of 21 (after 21, what happens is a long, and not necessarily pleasant story, to be told at another time).  We'll never know what Bil might have been capable of, had he received the proper interventions.

But, as a wise autism advocate once told me, we can not live in the past. We have to work with the present day Bil, to make sure he has the best quality of life available to him.

But still...I dream....if only.  If only, in life, there could be do-overs.

Come over to Everyday Gyaan, link up if you wish, and read some other Friday Reflections.

Friday, December 9, 2016

Skywatch Friday - Moon over the Mall

My brother in law is developmentally disabled.

One of his favorite activities is visiting our local shopping mall in the Southern Tier of New York State.

I took this picture right after sunset tonight, trying to frame the moon between the utility wires.

Linking to #SkywatchFriday.  Come visit sky pictures from elsewhere in the world.

Friday, December 2, 2016

Ten Ways to Win His Heart

My brother in law "Bil", who is developmentally disabled with a condition called autism, is not easy to know.  He doesn't open up easily to people he doesn't know.  It takes him a long time to warm up to someone.  His disability also affects his ability to relate to, and communicate with, people.

Today's prompt on #FridayReflections, is to describe "10 Ways to Win Your Heart". Since this blog is, in part,  about my brother in law and my relationship to him,  I asked myself, how well do I know Bil?  Can I try to answer this prompt for him, since Bil does not go online and does not read blogs?

Let's see how well I do.

Ten Ways to Win Bil's Heart:

1.  Accept him for who he is.  Of course, isn't that true for everyone?

2.  Take him shopping. Bil loves to get out of the house and shop.  He doesn't drive, and doesn't live in walking distance of any shops, so he is dependent on family to do this for him.

3.  Buy him chocolate.  Yes, Bil loves chocolate.

4.  Make him Chicken Divan.  I don't know if this recipe is the one his mother uses, but it is quick and easy.

5.  Let him follow his routines.  Because, for people like Bil, routines give stability in a world he finds hard to understand.

6.  Let him watch The Weather Channel.  Why? Because he loves weather, and he loves weather broadcasters who happen to be female and blonde.

7.  Be a New York Mets fan.  Because he is a Mets fan, too.  He follows their games, memorizes the scores, and will sometimes, out of nowhere, ask a question about if they won the night before.

8.  Buy him a book he likes, or take him to the library.  Science/weather is at the top of his list.

9.  Don't bring him into uncomfortable situations.  If you have to, it's good if there is a TV nearby.  See #6.

10.  Don't force him if it can be avoided.  The problem is, sometimes there are things that have to be done that he may not want to do.  It can be so tricky to talk him into doing something like that, like going to the dentist.  And sometimes, I have told him flat out, none of us always get what we want. The key here, I think, is to "pick your battles".  As I raised a child into adulthood, I know a lot about picking your battles.

I have a long way to go in understanding my brother in law.  But, if we take the time, we may find an interesting person beneath the layers of defensive behavior he has built around himself.

Come link with other participants in #FridayReflections.